MDA Is Empowerment

Advocacy

An important way to get involved with the MDA community is through the Association’s advocacy program. Based in Washington D.C., the advocacy team monitors and supports programs, legislation and health care policies relevant to people with neuromuscular diseases, such as medical care, insurance, accessibility, transportation, independent living, personal assistance services and research funding.

MDA’s “Take 5” advocacy initiative encourages everyone to “take five minutes” to contact their elected officials using online tools that provide talking points about important legislation and contact information for elected officials.

MDA’s National Task Force on Public Awareness[2] is a group of volunteers who advise the Association on issues of interest and importance to people with disabilities. The Task Force consists of adults who are leaders in their communities and who are affected by one of the neuromuscular diseases in MDA’s program.

Since MDA began, adults with neuromuscular diseases have been among its leaders as members of the board of directors and advisers. Under their guidance, MDA has educated the public about living with disabilities, and supported efforts to provide people with disabilities with equal rights and opportunities.

National legislation to which MDA lent leadership and support include:

Muscular Dystrophy Community, Research and Education (MD-CARE) Amendments Act (originally passed into law in 2001; reauthorized in 2008);

Spinal Muscular Atrophy Treatment Acceleration Act;

Genetic Information Nondiscrimination Act (passed into law);

Medicare Improvements to Patients and Providers Act (passed into law);

Access to Complex Rehabilitation and Assistive Technology Act; and

ALS Registry Act (passed into law).

"My ultimate happiness was found in the world of advocacy. I encourage anyone who is thinking about taking on a leadership role in advocacy. It is very rewarding. Receiving help is an art ... Through advocacy I can give back."